Peace of Mind

Photo by Kevin J. Fischer

Victory is ours! I've just received a text message from my mom, alerting me to the fact that she and my dad are signing their will and Willie's special needs trust papers this morning. I'm proud of them for completing this important task; it isn't easy to set up a will, to sit at a desk and contemplate terrible loss and worst-case scenarios. In fact, this past September, my parents actually asked me to help them overcome their procrastination and aversion. They requested that I hold them accountable to making an appointment with a lawyer. (I'd taken the lead[3] to initiate the topic months earlier, so they knew that I wanted to help facilitate the process.) Today, I'm both relieved and gratified; I've been looking forward to this moment ever since we began the conversation about special needs planning.

Hearing the news brings me a specific kind of happiness, and my hope is that, by sharing it, I'll encourage fellow siblings and family members to take similar steps. (As I mentioned in a prior column, a 2008 Easter Seals study[4] noted that only 38% of autism parents have made wills, and just 17% have set up special needs trusts.) This happiness comes with overcoming procrastination. It's the thrill of doing what writer Gretchen Rubin[5] calls, “tackling a nagging task,” and it's surprisingly satisfying. Beyond that, there's also a sense of freedom and expansion. Knowing that my parents have a will and trust in place is liberating, as I believe it would be for any special needs sibling who has lost sleep from stressing about the future. (Imagine suddenly assuming guardianship in the midst of intense grief … and on top of all that, having to deal with confusing and complicated paperwork to get your sibling's coverage and benefits sorted out.)

Now that these practical provisions have been made for Willie's future, I'm better equipped to focus on the present. By putting myself in the uncomfortable position of nudging my parents toward creating these documents, I've added to my own contentment. As Rubin writes in “Happier at Home[6],” “Happiness doesn't always make me feel happy. Often, my happiness is best served by undertakings that make me feel anxious, uneasy, frustrated, or stupid.”

In other words, happiness can be complicated … and that's what I understood when I helped our Mom clear out a drawer of “Willie” paperwork over the Thanksgiving holiday. We often take on decluttering projects[7] together, and this one was especially appropriate, given that I could help her decide what to toss. In my former role as a program director for a caregiving organization, I led an annual process of culling individual homecare files, so I have a sense of what ought to be kept. (Hint: Keep all personalized correspondence from Medicaid and Social Security.)

At the very back of a file, I glimpsed Willie's diagnosis papers. A shiver ran through me; being in the waiting room of the diagnostic center is, after all, my first memory[8]. We didn't read through the report, but simply spotting the cover page was illuminating. As the paper noted, Willie was diagnosed when he was 3 years old, not 2, as I'd previously thought. (That made sense; in 1990, when he was diagnosed, autism awareness was nothing like what it is today.)

By the time we'd completed the task, I felt an overwhelming sense of—what? Compassion? Fatigue? Awe? The papers in that drawer represented years of doctor's appointments, financial management, medication changes, and more. The enormity of it washed over me, and I realized anew that caring for one person means a lot of paperwork, a lot of time, a lot of love. Impersonal as the documents were, I couldn't help but be moved. And what touched me most was the sight of our Mom's face—lighter, less weighed down. In letting go of old papers, I could see that she was more empowered to care for Willie. And that's how I feel today, having heard the news about the will and trust: lighter. With this lightness comes a sense of resolution, even peace. It's a small thing, yes, but perhaps peace on earth can begin with peace of mind.